Who I Am

I hope to have several guest posts written by adults with Down syndrome. 

I already have one that I am sitting on by a remarkable man, Alex.  I have emailed several others requesting posts.  I am very much looking forward to any words by any and all of them.  I will be including whatever Elise decides to give me, as well. 

I was inspired by a book that I read on Autism.  NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.  It was talking about the history of autism, and that policy changes only really came when parents got involved over the professionals.  And that listening to actual autistics will be where the neurological acceptance revolution will take place.  I know that I write as a parent of a person with Down syndrome, because for now, Elise hasn't found her voice.  I hope that I will know when it is time to let her make her own choices.  I know that it will be hard, but I also know that letting her grow up and be as independent as possible will be exhilarating and joyful to witness.

So, if you know someone who might be interested, PLEASE get us in contact with each other!!

Toys

I have a thing for toys.  I mean, I like them as much as my kids.  Probably more, sometimes.

I am completely charmed by the faces and the back stories and the tiny proportions and the magic of what could be made up in their tiny worlds.  The itty bitty accessories and conversations that they hold in my head hold me captive, even now, in my mid-forties.  I can hold the toys of my childhood and I can smell my mom baking bread and the wet dirt under the bushes where my brother and I played.  I am completely in their tiny, fixed plastic clutches.

I hold on to a lot of the kids' toys for two reasons:  1) because there was always a sibling coming behind that would want/need them, and 2) because they tend to loop in interests.  They are completely obsessed for years, and the toys become a part of the fabric of our family, and then suddenly, a switch flips, and could not care less.  But, fairly often, they also abruptly remember them and we need to acquire them again.  These loops made me nuts because they were expensive to be purchased a second time, if they were even available. 

But as we are coming to the end of our baby years, I am facing going through all the rubbermaids that hold their childhood, and it is a daunting task.  It is horrifying in the sheer time it will require.  It is nauseating to face the things that will need to be trashed after being exposed the the swings in temperature that Georgia offers in an attic.  And the tiny friends that will need to be donated is just selfishly hard on me.  Disposing of magic feels so wrong.

But it needs to be done.  Because it's time.

Some for 21: Speaking of

You'll notice my super commitment phobic title.  I know I won't be doing 31 posts for the annual "31 for 21", so I just promise *some* this year.

As I have mentioned so many times before, Elise's speech is her area of greatest delay and struggles.  She has both delays and fluency issues.  Disfluency being the proper terminology for stuttering.

We have speech therapy both at school and outside school.  She gets it for functional reasons at school and personal expressionism and general communication outside of school.  Both therapists have focused a lot of effort targeting the disfluency.

This week, after a very severe week of gum ups, her outside therapist brought up speech devices again.  So I dug out the talk box that we got for her over 5 years ago, charged it up and let her see if it looked like something that can finally help with some support.  It looks like the buttons are still too small and the layers too complex, in short, the problems are still not outgrown.

So I guess we will have to search for something else.  I do know that Elise likes to talk.  I know that she is willing to go to great lengths to get her thoughts across.  I hope that we may be able to find something that will give her all the communication that she so desperately desires.

Putting Out Fires

For almost all of Elise's life, we have been functioning as wildfire fighters.  We were actively battling a blaze that could do serious damage, or we were looking forward, trying to cut off one early before it did damage.  Both medical and developmental.

It is exhausting and rather puts blinders on you so you miss other situations in life, simply because they aren't at emergency levels.  Sometimes it is stupid things, and you realize that younger siblings don't know how to ride bikes or swim real strokes.  Sometimes it is bigger, but you don't realize until you hit code red for someone else. 

I don't want it to be like that.  I read a book as a middle schooler that made me worry about situations like that, but as always, just because you are aware in theory, doesn't mean you will be able to stop it.  I try to stop, even in crises, to have deliberate moments with each of my kids, but stuff still slid by.

I am happy to report that we have had several fires to put out for my others lately, and Elise has had a few things forced to slide.  I know that sounds funny, especially after what I just wrote, but do you understand what that means??  SHE WASN'T AT EMERGENCY LEVELS!!!  Like it was so nice and boring that I missed her growing FOUR INCHES!!  FOUR.  I just cannot even wrap my head around that.  This also means that her health is stable enough to grow.  Unlike when she was a baby and she couldn't grow because her body was too busy keeping her alive.  Or when she was a toddler and it was trying to fight cancer.  Or when she was a little girl and it was trying to tell us her thyroid was broken.  OR when she was having such a bad time with puberty that she missed well over half of her school year.  Or when her Vitamin D levels were so low she couldn't stay awake. 

I am excited over the height, but I am most excited about what that actually means.

I am excited that she can get in on THE REASONS I HATE MY MOTHER COMPILED FOR MY THERAPIST list that every child gets to make....and that they whip out when they are raising their own kids...as their kids compile their own list.

Living life without panic is a good place to be.  I look forward to more.

Talking Amongst Ourselves

Elise's biggest struggle is speech.  It has always lagged behind.  I think she is "officially" at a 3-4 year old's level.  Receptive is a little higher than expressive, but as she is fifteen, it's not like dickering over a year is going to change the situation much.  She is not even close to where she should be...and if you've ever chatted with a 4 year old, you know how much gets lost in translation.

I know that I regularly cheer over how she is playing, but the most recent play of choice is Littlest Pet Shop toys, and, thanks to YouTube, she has started casting her LPS critters in movies, which she then has them act out.  Very recently, she has started breaking away from the scripts.  They have been having conversations and even songs that do not belong in that particular movie.  I know that does not sound like a big deal.  But when her favorite drug to deal with stress is to loop 45 seconds of a movie, any kind of extrapolation is kind of a big deal. 

There have been many things that we have not arrived at on time.  Like, some milestones are literally 10 years behind at this point, and not looking like they are coming anytime soon.  There are, however, things that are right on time, that I would have loved to be delayed until we had the emotional wherewithall to deal with.  Like crushes on boys, and planning her future, and well, that list is way too long, too.  It feels like there are just innumerable things that just cannot sync up...and are exhausting on their own.  Not that they are a barrel of awesome when they come when they should, but without the emotional maturity, they are brutal to deal with,

But, honestly, that she is play acting her dreams with tiny plastic puppies is pretty precious to me.  She recently expanded her play to include furniture.  (I know, that I notice this is weird to me, too.)  The lining up and sorting into "families" is just as comforting to me, as to her, because it is the one thing I can count on.  That, and the incredible mess she will make as she sorts all her hoard of creatures.

She has fallen in love with Hulk lately.  They are getting married.  She is having a wedding cake and a wedding dress and it will be on a cruise or a beach.  I am not sure why she loves him so much.  I don't know if they speak the same language, have the same unbridled emotions, or what, but this crush fascinates me.  I will probably get her a Hulk doll, to see if she will play Barbies with him, like she did with her Ironman doll.  See if I get any clarity.

I shall keep you posted, of course. 

31 for 21: Spectrum

It is 31 for 21 season.  31 posts for the 21st chromosome.  Another Awareness.

As annoyed as I am with the concept of Awareness (you've all seen me say stuff on this), I like to at least make an attempt at the blog posts for Down Syndrome Awareness, because people like to learn during the "fun season".  Walks and festivals and celebration make learning easier and more fun.

When I started this blog, I was sad that there weren't more blogs on older kids.  As my own child grows older, I understand why there are less.

It's hard to discourage people.

It is hard to say, nope, no massive progression.  Again.  My kid, while making huge progress for HER, is still functionally non-verbal, because she is still struggling with word sounds and word progression.  She still speaks like she is a walking emoji and text acronym, mixed with debilitating stutters, and you have to really work to make sure you know her conversation subject matter, so any of it can make sense.

We won't even discuss tying shoes or self care.

It is hard to know that the damage Down syndrome does is a sliding scale with a spectrum of impact, and that sometimes, no matter the intervention and therapy, it's your child at the lower end of the spectrum.  It is hard to tell people with younger kids, that not only is it true in theory, but you have a super cute proof living in your house.  I'm not one to offer false promises, but I also don't want to be a Debbie Downer...constantly reminding them that sometimes intervention doesn't "fix" everything.  That you don't even want it to, you just want your child to not be trapped in their own silence.  While at the same time watching while others send their children off to real colleges, and real jobs...and not wanting them to give up hope.

It is hard to tell people who don't understand, who have kids that function within the spectrum of normal, that nope, your kid still isn't growing up.  That while they cry that their babies are growing up, yours isn't, and that is a thousand times sadder.

I have no real news, but I am going to try to offer her favorite subject matters.  So if you know us, you can understand her passionate subjects.  And if you don't know us, you can take a page out of this blog, as it were, and ask the parents of kids that you know that are trapped in their own worlds, where the doors are, so you can find a way in.  Because despite the static activity at our house, we still have the childhood magic of still believing all the fairy tales, of limitless imagination, and of not allowing reality to take any fun out of your day.

We believe that tiny creatures that live in plastic houses, have actual feelings and adventures.
We believe in Santa and fairies and Disney endings.
We believe in costumes that power imaginations.
We believe that crowns make supper more delicious.
We believe trampolines and swimming pools are still viable exercise programs, but don't call it exercise.
We believe sharks and crocodiles and sea monsters live in local lakes and do our bidding.
We believe that colored gloves transfer super powers.
We believe in anything we want.
Reality is completely negotiable.

And really, I prefer supporting the boundless creative, especially in the face of looming disability.  Because it is more fun, and doesn't change the narrative.  If you don't look into the face of a 2 year old and kill the magic, and just enjoy the ride, why can I not do the same with Elise?  So I do.

WE HAVE ANSWERS

Or one answer at least.

Scroll back one post for my frustration at Elise's exhaustion and the lack of response on the part of her medical professionals.

After three years, we stumbled onto at least part of the answer.

As a child with Down Syndrome, vision screening is an annual process, with specialists (as it is with everything).  So we go usually in February.  I was too tired to go then this year, so I got her in at the end of March.  She was tested and they decided that her vision was off enough to warrant glasses.  But not near sighted, as genetics would have caused us to suspect, but far sighted.  They arrived at the first of April.  She chose them.  Bright, neon pink.  I was floored, but decided that if pink would make them fun enough that she would choose to wear them, then I didn't care and she could have them.  They are called Rainbow Cookie by Dilli Dalli.  They are squashy and flexible and have a headband on the back to keep them snuggled up on her face.  She LOVES them.  They have a home on her bedside table that they are placed on super carefully when she goes to bed and they are on her face as soon as she gets up.

The most important part of the story is that she is not straining to see constantly and doesn't get as physically tired.  She can see, and is finding better success when she is writing and drawing and coloring.  This is keeping her on task longer, is lessening her frustration, and is improving her work.  She is not over tired every single day, and is sleeping more deeply and is waking more refreshed.

Being better refreshed, she is more willing to do physical things.  Which segways nicely to my other new good news.  I bought a tandem kayak for Mother's Day.  My parents are very gracious to watch my kids so I can play on the lake, but this summer, they decided to tour the Northwestern United States and visit family.   Consequently, if I wanted to paddle, I needed to find a family option.  Amelia is a competent paddler.  Charlotte might be.  But Elise is not.  However, I did discover on our family vacation, Spring Break 2016, that Elise very much liked a kayak and was willing to attempt to paddle.  Furthermore, that if she tired, I could manage the whole 13.5 feet of it myself, with no problem.

So, I got one that I could put Elise and Charlotte on and I put Amelia on Ethan's kayak.  It has gone over brilliantly well, and we have gone out several times.  Everyone thinks it is grand fun.  Interestingly, I put it on their older brother, Gabriel's truck.  And as he is in the Army now, seeing his truck in our driveway every day was rough on them.  Now they see it as a kayak transport, and they don't cry when they see it, which was an unexpected bonus.

When Amelia and Charlotte were in VBS, we took out Willow on it.  As a consequence, she now has a real life jacket.

This may not appear to be a huge deal, but when you life stretches out with a daughter that will likely remain at home, that she will be able to participate in an activity that you love, it looks more fun and less wearying.

She also likes to hike.  I mean, she would rather die than walk on a sidewalk or road, but in the woods, she is more than willing to push a little.  Also, very hopeful.  I haven't sorted a way to keep her from getting painfully hot...but I am going to probably look at a camelback and see if hydration will help.

But have I mentioned that I feel like I am getting my hoped for life back??  I am.  I can live without family biking trips if I can find other "family fun options" that don't exclusively consist of movies and restaurants.

Hope is a little word, for a big thing.